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I found out via Jen’s Place in the Blogosphere that it was National Invisible Chronic Illness Awareness Week a couple weeks ago. I am (as I am usually) a little late to this party, but given that awareness is one of those things that shouldn’t really be limited to a week, I figure there’s no harm in suggesting you bloggers out there contribute your thoughts via this 30-point meme.

[PS — The new and improved DF layout lets me post “asides” in addition to full-blown entries. Pretty cool, right?]

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I’ve been remiss.

It has just occurred to me that I’ve been arguing against a definition of “functioning” without ever actually stating the definition with which I have a metaphorical bone to pick. In the About the Site I wrote that “The Central Thesis of this site is the belief that the higher up a mentally ill person sits on the Functioning Spectrum, the less that particular spectrum (or its definition of “functioning”) actually describes that person.”

The most prevalent “spectrum” is the Global Assessment of Functioning Scale. Go ahead. I DARE you to find one (and only one) place where you could confidently put yourself on this scale.

I’ll go first: Given my everyday, normal life I could put myself anywhere between 35 and 65 (but not really in the 40s). Because I am in a good marriage, someone who knows me well would probably put me between 60 and 70. Precisely because they don’t know me, anyone else would probably see something above 90 when they look at me, my work, and my life. That being said, at least twice a month, I fall to about 25 for a day…but had I not just written that, no one would know.  Since those low points aren’t persistent states, I don’t think anyone who uses this scale would care about them. AND THAT’S THE PROBLEM.

The problem with the “high-functioning” label is that it’s based on these strange and seemingly arbitrary metrics. This is a scale that might make sense for some, but what happens to people who look like a 90 and feel like a 20?

The fourth hit really says "Do We Need Theory to Study Disease?"

Upfront Disclaimer: This post is probably unforgivably biased by the current reading.

When I first thought to offer this up as a discussion topic, I convinced myself that it’s a potentially esoteric-to-the-point-of-absurd topic, as is arguably the case with most of academia.

Then I reconsidered: Most people do not read scholarly, peer-reviewed publications. I, for one, do not read them regularly, and when I do my reading has nothing to do with mental illness. That being said, most people read or watch the popular news, and every time another study saying something anyone might find interesting is published in an academic journal, some popular news outlet does a little piece on it.

A few days ago, forum member Meredith pointed me toward this such news piece. If you don’t feel like reading it, I’ll summarize by saying its title is “BD II patients exhibit distinct cognitive deficits.” I read the article and had about a thousand unanswered questions, so I accessed the actual study and read that. Perhaps needless to say, the summary provided by the more accessible article was just a tad overly generalizing. And that title is just silly.

This post is not about the specifics of this one piece, but about MI-related research more generally. My obsessive nature leads me to read all the citations in a stupid, inconsequential article found on the Internet. And when that means I end up reading mental-illness studies, I generally get pissed. Who are these people? What are these tests? Who invented (and who vetted) these tests? Who’s measuring that they, in fact, measure what they say they’re measuring? How generalizable are they claiming their findings are? What’s the readership of this journal? Whose clinical practice is about to be affected by this nonsense, and how many patients do they have? What sources are these writers citing and how old is that research? … And down the obsessive rabbit hole I go.

I have a tenuous, at best, relationship with mental illness research, and I’ve identified two reasons for this. First, I think the research questions are almost always the wrong questions and the research methods are almost always the wrong ways to answer them. Granted, I’m not a psychological researcher, so it’s likely that I don’t know what I’m talking about. Still, “Are BD II patients cognitively impaired?” seems like a less than productive question. Couldn’t we focus research resources on how to raise the cognitive functioning of those who think they need it? Isn’t whether someone “feels impaired” all we really need to gauge? Most research questions of this sort lead to some variation of “So, Johnny, now that we’ve diagnosed you as mentally ill, we’re going to have to diagnose you as stupid. If you don’t feel stupid now, don’t worry – You will.” (And by now we all know how much I dislike methods that use “objective” metrics for completely subjective variables. But that’s just me.)

The other reason for my distaste lies really in the popular (“accessible”) news media that cover these publications. The title of the example article is a definitive statement not truly concluded in the study being covered. And the studies asking unproductive questions (with maybe inappropriate methods) are each being reported on by a culture that promotes a terrible stigma. Ugh.

So, Questions: Am I alone in this frustration? Even if all you know about the academic research going on is what’s reported by news outlets, how do you feel about it? Maybe more importantly, do you feel as though the bulk of research being done is for the benefit of the MI community? Because I don’t.

Hey! New thing for Define Functioning! A Bulletin Board! As many of you know, I’m neurotically opposed to blindly endorsing or suggesting anything. (This is why I read everything I put in the Reading Room.) That’s precisely why I’m calling this a “bulletin board.” In these posts, I’ll send out an announcement for events and the like that may spur some discussion here for us, but that have not been thoroughly vetted by me (which is basically impossible because the events haven’t happened yet). If you have something to post on the Bulletin Board, shoot me an email at definefunctioning [at] gmail [dot] com.

Yesterday I received an email about an event in Portland, Oregon, called “Rethinking Psychiatry/Moving Mental Health Recovery Forward: A Community Forum.” I was sent the email because I am currently reading Robert Whitaker’s Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of  Mental Illness in America. Whitaker, along with five others, comprise a panel “who will share their perspectives and plans to create a more compassionate mental health system in Oregon and across the nation” (emphasis in original, quoted from the event website).

The event is Thursday, 10 February 2011.  If you live in or around the Portland area, you can find all the details you need here. If you do not live in or around the Portland area, I’ve been promised video of the event in a couple weeks. I’ll post a link so we can see what they said…and talk about it if we want to.

As for the Reading Response to Whitaker’s book. If you’re reading along with me, you know that this is a challenging work in more than one way. I’m going to break my habit of writing as I read in order to see where this is going. The story he is telling is, thus far, linear — suggesting it would be imprudent for me to comment until I know how or where it ends. I’m a little more than 100 pages (of a 300+ page book) into it and need to see what conclusions are drawn before I know what to think. If you’re not reading along with me, I can so far tell you that it’s worth a read…at the very least as food for thought. However (Fair Warning), if you’ve been told the things I’ve been told about the causes for your mental illness, the first hundred pages are difficult. I mean, the kind of difficult that you’ll need to discuss with your psychiatrist.

Still crazy overwhelmed at work, so here’s the second Community Contribution post. I’m mashing up two proposed discussion topics because I think they’re related.

1. I was offered this link. It’s an article that describes a surgery purported to cure depression.
2. I was asked “Who are you when you’re not bipolar?”

I should say that the idea of this surgery sounds like science fiction to me. The idea of a surgical approach to mental illness does not sound like science fiction, but this surgery sounds like science fiction. My attachment to and reliance on my blackberry already makes me wonder if I’m a cyborg. Electrodes implanted in one’s brain might really make them a cyborg. That makes me nervous.

Still, even if it’s science fiction, the opportunity for a surgical ‘cure’ for the (as we’re always reminded) ‘incurable’ does imply that a person would be restored to themselves after the removal of an illness. I’m never not bipolar, but if the disorder magically disappeared, the question of what of me would be left is an interesting one. The question of whether I’d want to be that person or if that person would be so foreign to me that I wouldn’t feel like myself is also an interesting one.

Personally, I don’t think I’d do it, because I’m already me…but that’s just me. My self-conceptualization is a little complicated, maybe: I am not my disorder, and my diagnosis is not me. But I was diagnosed largely for being me. I’ve had symptoms for most of my life, they just weren’t severe enough for diagnosis until ten years ago. Maybe I could put it this way: Sometimes I get in my own way. Sometimes my symptoms get in the way of being myself, despite the fact that those symptoms are part of me, the result of the way my own personal brain works. What are the odds that this makes any sense and isn’t completely circular? Again, that’s just my take on myself.

So that’s the discussion topic: If there were surgery, would you consider it? Who do you think you’d be? How do you conceive of yourself relative to your disorder? Think you’d be you with electrodes implanted in your brain? What’s the difference between surgery and meds?

As could be expected and as due diligence dictates, before starting this site I looked around for a forum for people in remission from mental illness. I called my local NAMI chapter. I went through what the Internet has to offer. I didn’t find nothing, but I didn’t find a discussion either. I periodically redo my search, looking for resources to post in the Reading Room and to maybe link up with individuals.

Yesterday’s hunt yielded mostly things I had found earlier. Here are some things I (re)read today: Healthy Place Blog (2010), Everyday Health (2010), Anxiety Insights (2006), Overcoming Schizophrenia (2009), PsychCentral (n.d.), Anxiety Self Help Blog (n.d.). Since definition, self-definition, multiple definitions, and clear definitions, are ongoing themes here, I tried to focus on just that. Given my recent reading and that the last post asked about metrics for wellness, I thought this discussion makes sense.

You can follow the links or trust me on the fact that they are a mixture of “the definition of ‘remission’ is different for everyone” and narrow declarative statements with clear-cut definitions. They are also a mix of “Remission happens when you do the personal work to achieve it,”  “Remission happens when you’re medicated,” and the positions in between.

Personal Viewpoint: I am currently in remission by my own definition. I am also not all that interested in using other people’s definitions. I have my own ways of measuring and determining that Remissionland is where I currently reside. I also believe that Remissionland is a neighborhood within the Town of the High-Functioning and not exactly the same place. This is because I have a different definition of “functioning” that includes different measurements. The Venn diagram would look like this:

After drawing this diagram, I considered that many people would find this ridiculous — that many people might even reverse the circles to say that you must step into remission before you can work toward higher levels of “functioning,” whatever that may mean. So, here I should just own up to the fact that my criteria for functioning are not as strict as my criteria for wellness. I should probably also own up to enjoying how much work I produce when I’m off my metaphoric rocker. I should own up to probably deriving too much of my sense of accomplishment from whether I’m in the blue circle regardless of whether I’m also in the red circle. Maybe I should own up to not knowing if that’s an OK thing.

Questions: What the hell is Remission? How does it relate to defining “Functioning” for yourself, to feeling good about how you’re getting by? Does it matter or is it just something doctors and medical statisticians like to talk about?

I stopped paying attention to the news after Saturday. The attempted assassination of a Congresswoman and the killing of a child, a federal judge, and four others were too much for me to take. Tragic. Appalling. I was livid and sad, and that’s not always a good state for me. Yesterday, I was told Loughner’s name and about some of the discussions surrounding his mental health. This morning I sifted through the Internet news coverage that is attempting to deconstruct the mental state of a killer. Tragic. Appalling. I am livid and sad.

To avoid quoting and citing sources left and right, here are some things I read: Arizona Daily Star, Time (here and here), KESQ, Newsweek, and Fox News.

I understand that something must be off in anyone who could commit this act. I am saddened by an apparent story wherein a kid needed help and didn’t get it, by this unfolding story wherein a system failed to provide help to someone who probably couldn’t know he needed it. I will not, of course, accept these stories as excuses for horrific action…

…because mental illness does not make you a criminal. Mental illness cannot be equated with evil. Mental illness is never the lone explanation for violence. The mentally ill are neither pity cases, helpless, ticking time-bombs, dangerous, nor villains. Shall we recall the oh-so-many people without mental illness who are dangerous? Shall we recall the oh-so-many people with mental illness who are not?

This might be harsh: We live in a violent and violence-laden culture. We also live in a culture that refuses to recognize many truths about mental illness. The mentally ill are just that: ill.  They/We need medical care. We live in a culture that somehow can’t compute that.

Why I’m bothering to bring this up in this forum: Schizophrenia and bipolar disorder are mentioned in most of what I read. I feel the stigma that keeps me closeted grow. Part of me says that we should all come out and speak up and show ourselves as examples of mental illness. Part of me is very sure that we’ll be seen as very special cases, that we’ll be labeled as the exceptions and not the rule.

I read one article in which the mother of a schizophrenic patient, in response to Loughner’s arrest, stated her fears of what her son may become. Tragic. Appalling. I am livid and sad.